Tuesday, February 02, 2016

I don't think I ever put it up here. It was four years ago when a geneticist figured out what was wrong. We knew that something was wrong for a long time; if you've been reading this blog a lot you've seen it, too. There were tummy problems and joint problems, and then the mystery of the death of my first child. The problem had gone misdiagnosed for years as a series of autoimmune diseases that didn't quite fit, or as psychiatric illness (read: that I was a faker who wanted attention). The solution started with Saul. When he was less than a year old, an older, more experienced pediatrician at Walter Reed sent him to a geneticist.

I took him. The question was whether Saul had Ehlers-Danlos Syndrome. The geneticist looked at Saul, pinching his skin and examining his joints. Then, he turned to me and said something to the effect that he couldn't tell if Saul had that disorder, but that I did. I was the walking poster child of the illness.

It's in the fibers. Literally. The fibers of my body were bad. There's a tough fibrous substance that holds you together called collagen. There are several types of it. My body was making it incorrectly, and causing me to be sick. My internal organs are too stretchy and therefore don't work just right. My joints are weak and literally come apart, never to heal. My skin is like putty and shreds. That's the problem.

It's my fibers. The irony, right?

So I get some pretty strange injuries, and I get them for seemingly no reason. My latest injury was that the first two vertebrae at the top of my neck came apart. They came apart from one another just from holding up my head for 39 years. When I say apart, the surgeon told me that the joint space was about 1cm when he opened me up. It should be almost non-existant with the two bones just about flush.

I did get that surgery at Walter Reed, and it was right after my last post. Within a couple of days, they called and said I needed to pack my bags and get on the operating table. It couldn't wait anymore, and there was a room available. Actually, it was a life threatening injury, and we all knew it. I was on the list to get the next available neurosurgery slot.

Now the bones are permanently bolted back one on top of the other, and I'm recovering. This operation was a major one, and I'll be out of commission for a long time. Along with the rods and screws in my neck, the bones have to knit themselves together. I'm stuck sitting in a rigid neck brace while this process happens. Normally I'm a process knitter, but I can't say I like this particular project.